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Joined: Sat Nov 30, 2013 11:46 am
Posts: 3
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Hi,

The penny recently dropped that we are very likely looking at LBD with my relative. At 85 his decline over the last few years has been put down to plain old old age, possible (but not proven) TIAs and more recently Hyponatraemia. I don't doubt the last one, that is/ was definitely there but there is a tendency to treat the current symptom rather than look at the bigger picture :| I think this is due to his advanced age... the same symptoms at 65 wouldnt be shrugged off. That said, in his case I don't know if an official diagnosis would make much difference as he has extreme sensitivity to any medications due to other health issues...so....

Quite frankly the more I read about lbd and its progression the more panicked I feel about what will happen next and how we'll cope. He continues to live alone with some but limited support. I don't know how much longer that will be possible. At the minute it's like we're just waiting for the next crisis :cry: and it could come anytime.
I may be here quite a bit in the near future... will gladly take any advise on board :)

Hazeltree


Thu Jan 02, 2014 9:07 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: new
Hi and welcome to a community of people who are supportive and have lots of information, useful tips, whatever! Here are some things that will make your lives a lot easier if you attend to them now or have already taken care of them:

1. Make sure all legal documents are in place - POA, will, Advanced Directive.
2. Make tentative arrangements for what will happen when his health deteriorates or safety issue crop up and he cannot live 24/7 by himself.
3. Check into in-home services, check out ALFs and SNFs, and get on waiting lists (there are usually waiting lists at the better facilities).
4. Get a handle on his finances so you know what he can afford when he needs help - in home care or moving to a facility.

I'd also get pamphlets from the LBDA so that you have up to date info. about LBD to hand to his medical people. There are still many drs. who know nothing about LBD, and it is important that they do because the meds that can help people with some types of dementia can be very detrimental to people with LBD.

Encourage the whole family to become educated about LBD and work out who is going to do what in terms of his care. Someone who is good with finances might take charge of that. Someone else could deal with the health care issues. Someone could be looking into in home care alternatives and facility alternatives. If one person has the burden of all of this is can be crushing. Take it from one who has been there and done that! It is much more than a 1-person job!

Read as much as you can on this forum and other sources that you'll see throughout postings on here. There is a wealth of info. on this site. I'd start reading the postings that are most relevant to your situation right now, and then keep on reading and encourage your other family members to do the same. When you have questions, if you post them under the most appropriate topics you're more likely to get responses sooner rather than later or not at all. Good luck, and come back often! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jan 02, 2014 10:26 am
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Joined: Sat Nov 30, 2013 11:46 am
Posts: 3
Post Re: new
Thanks LTCVT,

already your post makes me feel more in control purely by having me starting to list tasks rather than panic!
There arent really any other family that can help. He has a hospital visit in a few weeks time so I'm hoping we'll be listened to then. Since his last hospital stay there has been the first hallucination and first episode of incontinence which, though awful for him, will add some substance to our case that there's more going on than regular "Old age". Unfortunately he's very resistant and slow to change and accept help which makes things all the more difficult. However a diagnosis would help in terms of getting on waiting lists etc. It's also difficult when he can put on such a good show when talking to the medics!
I can't help feeling that we will be bumbling from one crisis to the next over the next few months though :( All we can do is prepare as best we can.


Thu Jan 02, 2014 1:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: new
Yes, being armed with information, and also writing down all the symptoms you are observing, then handing a copy of that to his drs. should help. He may have sudden and dramatic decreases in abilities and increases in symptoms such as incontinence, hallucinations, paralysis, etc. so the more you can prepare for what may come/will come, the better off I think you'll be.

Many people on here have found it a great help to get the LBDA pamphlets so that you can give those (ahead of time would be even better) to your LOs drs. The more THEY know about this condition the better off you'll all be. Hopefully he can be given some meds that will help his symptoms for a while.

I had put my dad's name on a wait list to get into an ALF, and before a room was ready for him he had a major decline literally over night. He was on the floor, unable to get up or even move the lower half of his body, almost completely paralyzed, 100% incontinent, could barely whisper, totally confused and delirious. He regained some abilities but was never able to go home again after being taken to the ER. I was so thankful he and I had made arrangements ahead of time for where he would live. If I'd had to try to find a place for him with no advanced warning of his terrible decline, I would have really been in a panic. (I live 500 mi. from where his house was.) By the time he got out of the hospital and spent 3 weeks in rehab, a room was ready for him at the ALF and he moved in there.

This disease can take very sudden twists and turns, so the more family members can prepare, the less trauma when things "go south."

Take care of yourself, too, while all this is going on. It's important for you to maintain your own health while helping your LO. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jan 02, 2014 3:22 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 231
Post Re: new
Welcome to the forum Hazeltree! You've definitely found the right spot to come for info or just to vent! Lynn has some great suggestions there and I would agree that going to the doctor with the symptoms listed and some LBD printed pamphlets will definitely help get the doctors thinking about LBD as a possible diagnosis. That really took us the longest time to get and really made a difference in slowing down the med changes all the doctors wanted to keep trying - that just sent my Mom into another series of symptoms/traumas. Good luck with the doctor visit!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Jan 07, 2014 3:10 pm
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Joined: Sat Nov 30, 2013 11:46 am
Posts: 3
Post Re: new
hi again,
I just thought I'd give an update.
Having been telling health professionals for the past year and a half that my FIL had suddenly acquired this shuffling gait and thats when everything started going downhill... finally today his Dr said "hmm he has a very shuffling walk, very parkinsons like" and he put him on sinemet. on one hand I'm glad someone is finally seeing it but on the other I'm :evil: :evil: "that's what I've been trying to tell everyone!""

anyway... i've calmed down now :P Overall he's ticking over ok-ish. his memory is dreadful but there have been no major incidents, no hallucinations etc for a while so I think we're in a good phase however long it may last. I bought one of those pill dispenser things to help him remember to take the meds, and then realised that he'll need to know what day of the week it is! Ok we can manage that with a phone call... then I realised he can't pop the little lids...

So... we're ticking over. We live an hour away from him and work an hour in the other direction and have young kids so it's hard but we have to make do with the services he's getting now, try to keep on top of things and deal with issues as they happen.


Wed Mar 26, 2014 6:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new
Thanks for the update. Glad you're finally getting through to the health care providers. The right meds can make a big difference for the good, just as the wrong ones can be disastrous. You are in my prayers. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 30, 2014 3:00 pm
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